had a bit of a scare today.

I thought I would just outline my VERY stressful morning.

I'm over it now but just a heads up to what can happen for those that might have a similar episode.

I was due to go out to meet people at 11:00am.

I had a few places to go on the way and my wife was out with her friend.

It got to the time to leave and off I went.

Very early into my drive It occurred to me that my eyesight was not as good as it could have been. I do wear glasses for distance particularly when tired. I also suddenly realised that I had left something switched on indoors so decided to return home to sort things out. (stress)

This was going to have the result of making me late. (more stress)

Upon restarting my journey It became apparent that my eyesight was worse with my glasses on than without. (Serious stress)

I cancelled my meeting and drove straight to my doctor who is experienced with PMR/GCA

I got in to see him within 10 minutes of arrival.

After an extensive examination. Blood tests. and a protracted interview of what I had been doing before leaving home. (working on a computer in very fine detail) he came to the conclusion it was not GCA (my main concern) In fact he said that it would be VERY unusual to get GCA whilst on 12.5mg Pred.

He sent me for an eye examination with an eye specialist/surgeon who also has experience with PMR/GCA patients.

After a full and comprehensive eye exam he also came to the independent conclusion that these eye disturbances were eye strain, tiredness and stress related due to the PMR.

As a result of the eye exam it has been discovered that my eye pressures have gone up since the last check and are now within 3 points of the medication point. 21 (whatevers) are the medication point and I am at 18. he has recommended that I have eye tests every 3 months and try to reduce the steroids to below 10 if at all possible.

I have a follow up tomorrow with the doctor to see how things are going and discuss the way forward.

These things are sent to try us hey?

Stay strong everyone.

Brian.

[Celtic PMRGCAuk volunteer]

Quite an eventful morning but at least it's good to hear that everything turned out well in the end. I'm most impressed that you were seen so promptly, not only by your Dr but also by an eye surgeon. If we all lived nearby, I'm sure we'd be queueing at their doors! " VERY unusual to get GCA whilst on 12.5mg Pred." Unusual maybe, but not unlikely. It's very common for eye pressures to increase whilst on Pred, but 18 isn't something to worry unduly about, just to monitor. As you reduce and get off Pred, they will probably reduce again. But, don't make this a reason to reduce your Pred any faster than your symptoms allow. Managing your PMR is the No 1 goal here - if your eye pressures do rise there are drops that will control it. And high pressures do not necessarily lead to glaucoma - you can have high pressures but not have glaucoma, whereas you can have glaucoma with normal eye pressures. Hope the follow-up goes well tomorrow and you have a less stressful day!

[DorsetLady PMRGCAuk volunteer]

Hi Brian,

A day you could do without. But good news that a. You did something about it, and b. The GP et al reponded in quick time.

As Celtic says a pressure reading of 18 is not dramatic, I think of one of mine went up to 21 at worst, the other 19, and it was deemed at that level that medication wasn't required. I was monitored for about a year, during which time the pressures reduced back to normal, as I reduced the Pred. Perfectly fine now.

I would however query the comment about 12.5mg being enough to stop GCA. So you may need to keep a closer record of any changes in your symptoms.

Good luck with your next appointment, and do keep us informed. Take care.

[PMRpro Ambassador]

I'm not going to be as reticent as Celtic - it is perfectly possible to develop GCA while still on 12.5mg - it depends how active the inflammation is. if it were enough they'd use that not a higher dose, wouldn't they!

A lot of people find their vision goes a bit haywire with pred. If it comes to that, it can go a bit haywire with PMR! I had to move my specs up and down my nose as appropriate! Saved getting news glasses every couple of months.

You saw a proper eye specialist who WOULD recognise any signs of GCA. But I really would take the "you can't get GCA on 12.5mg pred" with a very large pinch of the proverbial salt.

[Hidden]

Interestingly I queried the statement about 12.5mg and GCA and his explanation was that they use a 60mg dose to reduce already existing inflammation causing the GCA but if the inflamation isn't there a dose over around 10mg will prevent the inflammation from getting to that stage.

You have to remember that there is a bit of a language barrier here as the doctor is a Greek speaking Cypriot who in fairness speaks very good English and I am a Brit who speaks very little Greek.

I will obviously keep an eye on things but it was somewhat reassuring to find that PMR itself and also the steroids can cause visual disturbances. I thought It was GCA and panicked a bit, I must admit.

Onwards and upwards.

Thanks for the replies.

Brian

[PMRpro Ambassador in reply to Hidden]

There's a bit of a difference between 10 and 60 - he's quite correct about the reason for the high starting dose. BUT there is evidence that in GCA and other forms of vasculitis there is still inflammation present after 6 months on high dose pred - that is above 20mg/day. So I'd really doubt the efficacy of a mere 10mg! With mild symptoms (just blurriness and a bit of double vision in the morning) my rheumy here was happy at 15mg - but that was the start, if it hadn't done the job it would have been increased. And I had a short taper from a high dose, 40mg I think.

[HeronNS]

Glad things turned out well. I too have that raised eye pressure (18 - seems a common figure) and same thing, the eye doctor said to go back in four months (I'm below 10 mg). The reassurance is enough to majorly reduce stress!

[HeronNS in reply to HeronNS]

I'm thinking I remembered that wrong, 18 is my usual reading, and it had gone up to about 21, which is why he wants to track me more closely.

[Maxine-59]

Agree re eye pressures - my understanding is the range 15 to 20 is considered normal . They also look at the back of the eye for optic disc changes before any diagnosis linked to glaucoma but it is good to be monitored. You responded quickly to getting a professional view and in any event should do so again eye sight is too precious and easily lost through GCA - agree with others re statement about getting Pred down ASAP .

Best wishes Maxine .

[Deeroy2015]

Hope things get better for you

Best wishes

Dee

Has anyone had experience of having steroid injection instead of taking the tablets ?

[rodenski in reply to Deeroy2015]

Yes. Things were suddenly particularly bad soon after I came out of hospital (where they had diagnosed PMR and where they put me on morphine for a while) on 15mg and the GP gave me a shot of 40mg. Heaven for about 10 days! The rheumy was a bit annoyed later when she found out about it. Can't think why. GPs and specialists often seem to take different positions on this (and other matters).

[Gtgirl]

I had my eyes tested (routine) a couple of weeks ago, I have a history of borderline high eye pressure but not quite high enough for the drops. My appointment was at 9.0am and the reading was high. The optician (it was the 1st time I'd seen this one) asked me to come back for a recheck in an afternoon. I did a few days later and low and behold the pressure was well within the normal range! He explained that it is usually higher in the morning as spending the night lying down caused pressure to rise, if it stays up its a problem. At the time he explained the mechanics of it, all a bit scientific for me but made sense at the time! He also said that steroids could raise eye pressure. Thinking back all the previous appointments when I had been told pressure was borderline were very early morning appointments, may be just co-incidence? Still need to get it rechecked regularly but it certainly stopped me worrying. However with PMR I've leant you just can't be too careful.

[Hidden]

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